Macella receives an Ernie Davis Essay award at Elmira College

Today was one busy day for all of us. Gary took the girls to church while I traveled to Syracuse to be with my grandma who was in the ER. After church Gary fed the girls and then left for the college for Macella's ceremony.

Macella's essay was required to be titled "Express How Someone Special Has Influenced Your Life" and it was to be 250 words or less. She decided to write about Maria. Many schools were involved in the ceremony. Macella & her best friend won for their middle school, so that was exciting for both of them.




After the ceremony Macella went to a teen church party at the Proper's and Gary took their two younger daughters home to play with Kirstie and Maria. They all had a great time.

I spent the afternoon and early evening in Syracuse. Grandma became stable and is being treated for pneumonia. Tim and I caravanned to Cortland to visit my grandpa at Cortland hospital. He is dealing with an infection that the doctors cannot seem to figure out.

After visiting, I took the trek back home. Please pray for my grandparents. It's hard for them to be in two separate hospitals.

Now it's time to get ready for another busy week!

Our last report for China!!!!!

It is so hard to believe that we were traveling in China at this time last year. Wow has it been a busy year! Today we had our last visit from the social worker from America World Adoption. China requires a 6-month and a 12-month post placement report on adoptions. The social worker was out this morning to ask updated questions about Maria. Once she types up all the information we'll sign the report and it will be translated and then sent to China. What an exciting year. Maria is a joy!

Barium & Earmold fun

This morning Gary & I took Maria to an upper GI appointment at the hospital. I should have known that would mean drinking barium. It took them so long to call us in that thankfully Maria wanted the cup. She went straight for the doctor because he had a very shiny watch on. Maria went through three straws and drank some from the cup. Then she was just done. She was laid down for a 1st scan and she screamed through it. Then Gary went to the car to get her sippy cup, so we could hopefully get her to drink some more barium. Thankfully she thought she wasn't allowed to have her cup, so then she wanted to drink it. We kept hiding it, so she could look for it and then drink it. We were there for 2 1/2 hours, but Maria was a trooper. She had barium everywhere, but she made it through the test. The doctor said that Maria just has the normal reflux that all young kids have. It appears that Maria is clear, so that's good!





Then Gary took Maria back to the babysitter's and we went back to work some more at our jobs. Then at 3:30pm we took Maria to the audiologist for an earmold fitting. Maria was not very compliant at all! It took Gary, myself, and the audiologist to hold her down while she was screaming. For a small little thing she certainly can be strong. In the end we had two little things that looked like the inside of ears! We go back again in 2 weeks for the official ones that she'll always have to wear. Hopefully that will be less of a screaming issue!

Therapists, Heart specialist, Upper GI

On March 10 all of Maria's therapists and her babysitter met to discuss Maria's progress. At this meeting I told them of Maria's diagnosis. They all continue to be very supportive. I think they were relieved to hear why Maria's progress has been so slow and were also glad that they were all on the right track with her.

I was finally able to call Maria's pediatrician to tell her that Maria has CdLS. She immediately went to work in making sure that we had referrals wherever we need. On Friday March 19 we took Maria to a cardiac specialist for a cardiogram. We were able to see all four chambers of Maria's heart from different positions. I wish we had brought the camera. The nurse wanted to show Maria the "gooey" stuff for the ultrasound, so of course Maria immediately put it in her mouth. Then she just started rubbing it all over her chest and stomach. Maria was very wiggly, but every time we reminded her of the "gooey" stuff she was content to rub her hands in it! It appears that Maria's heart is fine. We are so thankful that we can cross that off our list of possible issues that she might have. Not only that, but we did not even have a co-pay for this appointment. We continue to praise the Lord for his provision in our lives!

This Thurs. March 25 Maria has an Upper GI appointment at our local hospital. I'm not sure what that entails, but hopefully she will be compliant during it. Depending on the results of that test we will know if we have further testing locally, in Rochester, or if we're finished testing. Then that afternoon we head to our local audiologist to see if she can make a different kind of ear mold to hold Maria's devices into her ear a little better. We are forever putting them back on her head. She does not like to hear! She thinks she's going to win this one, but we are going to find a way to keep those things on her head! It's our lesson in patience I think. Good thing she's a cutie!

Then next week we head back to NYC for an update on her cochlear implant programming. We're just making a long day trip out of it. She has one appointment at 2pm with the audiologist and one at 4pm with the surgeon for follow-up. We'll keep you posted!

Thanks again for all of your support. We're so appreciative of your prayers, e-mails, and calls.

Maria has another diagnosis

As I sit here trying to figure out what to write, I'm not sure where to begin. We know the Lord chose Maria to be a part of our family. She has already brought us so much joy and grown our family closer together. Our extended families and friends have been so supportive and grew to love Maria in an instant. We have been blessed with a fabulous babysitter, Sharri. Her love for the Lord and for Maria is so evident. We have also been blessed with wonderful therapists who work so hard to see Maria succeed.

It has been quite evident to us that Maria's needs are far more than her deafness and her adjustment to cochlear implants. She was 18 pounds at age 3, now 11 months later she is only 22 pounds. She is 4 pounds heavier and she would eat all day if we would let her. In addition she has made progress in her language, physical, and cognition abilities, but her progress has been slow. Many of you know that we had genetic testing done in November, but we did not share the exact reason for the genetic testing. Maria's eye doctor had suspicians about two different syndromes. He suggested that we see a geneticist.

We heard from the geneticist on Friday. She let us know that Maria has Cornelia de Lange syndrome. It appears that Maria has a mild form of it, as her facial and other physical features are not as pronounced as many of the children. Also, she has 2 variations on the gene that is present in people with Cornelia de Lange syndrome, but her variations have not been specifically reported. We are being referred to a medical research team in Philadelphia. It is not known whether they will be able to give us any additional information, but information about Maria may help the diagnosis of other children in the future.

This diagnosis does not change our current treatment plans of speech, OT, PT, special education services. It does mean that she will continue to make improvements in these areas, but we can expect them to be slow. Children with CdLS have communication problems and often do not talk or talk very little. This, along with the fact that those with cochlear implants take some time to learn about sound will also slow Maria's speech progress down. What impacts us the most is that we will be taking Maria to even more medical specialists. Children with CdLS often have GI problems, which causes children to sometimes be self-injurous. We attributed all of Maria's scratching, biting, and pinching to her implants, but these behaviors are present in children without hearing difficulties. For more information on CdLS you can visit the following website, but please remember that Maria most likely has a mild form of it. The webiste is: www.cdlsusa.org

We appreciate your prayers for Maria. Please pray that she will stop hurting herself. Also please pray that if she does have any physical issues wrong (i.e. GI issues, etc.) that the doctors will find them as soon as possible. We often feel that she is in pain, but have no idea if she is.

We are so blessed to have Maria in our lives. She is a joy and a gift from the Lord. God knew she would be in our lives. He knew that the 2 major issues she would have in her life (deafness & CdLS) would be communication/language issues and that I would be a speech langauage pathologist. I'm really glad I have the help of more experienced SLPs, but I'm so thankful that the Lord sent me to college, so that I would really understand what she would need. He is good and He will continue to care for her in ways that will amaze us.

Thank you all for your love and concern for our family. We praise the Lord for you.

$140,000 in Medical Bills

Did you see the title to today's blog?! Maria's medical expenses over the past year have totalled approximately $140,000. Do you know how big our God is? He knew that we needed a miracle to pay such bills. Out of that $140,000 we have only had to pay approximately $5,000 (that includes transporation & stay in NYC). We've put that $5,000 on a credit card; the credit card that continued to hold the approximate $8,000 we put on it to finish paying for our trip to China. We just finished our taxes and our refund will be enough to pay off the entire credit card. We have so much to praise the Lord for. We were praying that we would only have to pay 10% of her bills and we only had to pay about 3%. We often share our prayer requests and forget to share our praises. We wanted to share this wonderful news with you. Thank you for your prayers. We praise the Lord for you and for His wonderful provision in our lives.

Church talent show & Odyssey of the Mind

2/24--Today Macella & her friend Sarah sang at the church talent show. Macella sang with the teens at the end of the program. All of the kids were so cute.
Here are some pictures:

2/25 & 2/26--The girls and I got snow days! Even though we had a winter break last week, we were so busy that we started the week exhausted. These two days were such a nice chance to catch up on just plain relaxation.

2/27--Kirstie was in an Odyssey of the Mind competition in Binghamton today. She was on a team of 7 kids. It was an all day event. Kirstie left on a school bus at 7am. We met her there later in the morning. We were excited to see that some Whitney Point teams were there as well. We watched one of Kirstie's friends from WP compete and then she watched Kirstie later. My grandpa and Aunt Joy came to watch as well. While we were waiting for the awards ceremony we went out to eat at Friendly's together. We went back to the ceremony at 5:30. We were able to join our friends from WP, so that was nice. Kirstie's friend won 2nd place and Kirstie's team won 3rd place in their division. We made it home around 8pm. What a long day!
We forgot our camera, so below are some pictures from Joy's phone:

February 2010 trip to NYC

Due to Maria's appointment during our winter break we took an extra day in NYC, so the kids could have some fun on their time away from school.

Wed. 2/17--We left for NYC at 6am because Gary had to work in the city. When we reached the hotel Macella did homework, I worked on paperwork, and Gary went into the city to work. Maria was not feeling well, so she slept most of the day and Kirstie watched a lot of tv. When Gary returned from work he took Macella & Kirstie swimming while I watched Maria in the room.

Thurs. 2/18--We took the kids to Dave & Buster's (it's kind of like Chuck E Cheese). We had some very good food and had a great time! Then the girls went swimming again.
Pictures from today below:

Fri. 2/19--Today we walked from the bus station to the doctor's. The girls chose to save the cab fare for ice cream instead:) It was a cold walk, so I'm not sure why we wanted to eat ice cream, but we did! Maria immediately became upset when we walked into the Audiologist's office. She clung to me like her life depended on it. Her audiologist said that Maria had met her volume limit. She changed some things and made her four new programs. The programs are now based on her environmental conditions instead of gradually getting louder each time. She has a program for regular everyday, for speech therapy, for music, and for loud environments. After the appointment we walked a very long ways to get ice cream. It was our lunch!
Pictures from today below:

2/20--Today we traveled home and caught up on laundry and cleaning because tomorrow is another busy day!

2/21--Today we visited our home church in WP. It is always such a blessing to see old friends who continue to keep our family in their hearts. Then we went to Bob and Brooke's for Bob's 82nd birthday party. The girls really enjoy getting together with their cousins. What a wonderful way to end our winter break.
Pictures from today below:

Valentine's Day & Chinese New Year!

Today we celebrated Valentine's Day and Chinese New Year together. It was quite fun to have Valentine and Chinese decorations mixed together! The girls looked so cute in their outfits from China. We had a nice big family dinner together. Gary did a great job on the turkey!
Pictures of our celebration below:

Talent show, ENT, & family visits

2/9--Kirstie sang with a friend at the talent show in her school. They sang "One and the Same." Kirstie also sang a solo, "Draw Me Nearer." She is such a good girl.
Pics below:

2/11--Today Maria had a follow-up ENT appointment. It was a follow-up from when she had tubes put in her ears. He said everything looked good. Even though her ears look good she is having a very difficult time with her devices. She is constantly scratching her face and pulling her hair. She has scabs all over her forehead from her agitation. Please pray that she will be able to handle the noise soon.

2/13--We visited lots of family today. We started with grandma at Cortland Rehab. Then we visited Shirley and some of the kids. Then grandpa at home. Then Bob and Brooke. It made for a busy, but wonderful day.
Pics below:

Marsha's bday and the Superbowl

2/6--Today Gary took me out to Friendly's and the movies for my birthday. Then we came home and watched a movie with the girls. It was a nice restful day.

2/7--Today we went to church and had a nice relaxing day. The girls enjoyed having me open my gifts. They are so sweet. We went to the Proper's for most of the Superbowl. We all a good time. The kids enjoyed being with some new friends.

2/8--We got to eat my birthday cake!
Enjoy some pics from the whole weekend below:

February looks like another busy month!

2/2--Gary met with Macella's guidance counselor today. She signed up for courses for 9th grade. Due to her grades she will be taking quite a few 10th grade courses. She will take 9th & 10th grade English, 10th grade math, and 10th grade Spanish, gym, computer course and band. She doesn't have to take 9th grade Social Studies because she will be taking an honors Social Studies when she gets in 10th grade that covers both grades. It seems she is growing up way too fast!

2/5--Today Maria got her 1st haircut! Her hair was able to be evened up, but because it hasn't gotten long enough she still needs to have it put up in high pony tails. She's starting to look more like a little girl rather than a toddler:)

We end January with Aunt Joy

It's kind of nice to live so near an airport, especially since the fares are so cheap from here to Florida and back. Joy spent the night with us lastnight and we took her to the airport today. It was a nice way to end our first month of the new year.

Maria to the doctors

Maria has been upset about her ears, but we assumed it was due to her hearing devices. She did not seem any more upset than before, but she continued to pull at her ears. The doctors in our area are being extremely picky about who they see in the office. Due to so many flu like symptoms and other common colds they insist a fever must be present in order to be seen. Since Maria cannot explain what is bothering her and her ears have been smelling bad they decided to let me take her in.

She ended up having a middle ear infection (swimmer's ear). The poor girl most likely had that infection since last Friday. I noticed the smell at the audiologist's office and they had me clean her ear molds. We just figured it was ear wax on her ear molds. Most likely what happened was that water was trapped inside her ear when we put her ear molds on after a bath. A middle ear infection never even crossed our minds. Now she no longer uses the ear molds which means that her devices are constantly falling off her head.

We're thankful for a wonderful "speech person" who suggested that I take her to the doctor's right away. Wow, speech pathologists are great!

Visit with grandma & grandpa at Cortland hospital

Today we were planning to visit my grandma in the rehab unit at Cortland hosptial and we were told that my grandpa was in the hospital as well. He had trouble breathing, so they admitted him. We took the short trip and visited with them both.

Grandma's unit has birds and cat. The girls also enjoyed a big ball, puzzles, and toys. Maria especially enjoyed her great grandma's walker!
Enjoy some pictures below:

1st trip to NYC in 2010

Today our friends made sure that Macella & Kirstie made it to school and we left for NYC at 6:30am. We parked in NJ and took the train into the city and a cab to the Audiologist. Today Maria's devices were turned up and more frequencies were added. It was quite amazing to watch her react to the sound of "sh". It completely scared her. She did not like the "s" sound either. It made us feel horrible that the way you would normally calm a child by saying "SHHH" did not work with Maria, but bothered her even more.

Again we were given four different programs to take Maria through with an increase of approximately one program per week. This time Maria appears to be displaying even more upsetting behaviors with her anxiety.

A few pictures below:

Changes in the New Year

We start January with continued changes in our lives. The girls did special music in church on Sunday morning Jan. 3. It's nice to see them get involved and serving the Lord.

Then Maria started going to Sharri's house during the day. Sharri has a real heart for Maria and is willing to have numerous therapists in her home. She is truly a Godsend.

Then my mom spent the weekend of Jan. 9th with us and we took her to the airport on the 10th to fly to Florida to be with Dale. I know she is very excited to get to be with him.

Gary went to an informational meeting about the high school this morning and tonight I went to a ladies dinner at church. It is unbelievable to think that Macella will be going to 9th grade in the fall.

The year is only a couple of weeks in and we're already witnessing so many changes. What will the rest of the year hold?

Our last hurrah before going to work and school again

Today we went to the Carousel Mall in Syracuse to enjoy the last of our Christmas vacation. We enjoyed visiting all the toy stores. Maria played in a little jungle gym. We all had a good time riding on the Carousel too.
Enjoy some pictures below:

The 1st day of 2010!

We had a nice time with our friends Aaron & Bev and their daughter Cari. We celebrated our Christmas together today. We enjoyed some time playing games while the girls played outside. They are always so good at getting us family games, so we can play with them and then use them for our family game nights. It was a nice way to bring in the New Year.
January 1, 2010 pictures below: